Category Archives: wider world

personified lock (unlocked) fighting personified corona virus

Open Vs. COVID Round 2: Collaborating for the Knockout

Opening up information is one of the keys to a concerted and effective response to the COVID-19 Pandemic. We need to make sure that insights from the world-wide treatment efforts are discovered quickly and shared widely to ensure effective preventions and treatments spread. A case in point on the power of coordinating and sharing medical information comes from the Castleman’s Collaborative, illustrating how open processes and open resources can be an asset to humanity in this global health crisis.

“Doing in a year what often takes a decade.1 I recently caught Terry Gross’ interview with David Fajgenbaum on Fresh Air about ‘crowdsourcing’ a cure for Castleman’s disease, which he suffers from. It’s a great listen. Castleman’s is a deadly disease for which little is known because of its rarity and the dispersal of cases. Luckily for the world, Fejgenbaum was in medical school when he had his first attack and, because he was close to finishing his medical degree, he began researching.  He discovered that little coordinated information and study was available. The Castleman’s Collaborative, https://cdcn.org/, has come up with an eight step research process that is crowdsourced, prioritized, funded, executed, and published (almost all freely available). Much of the research targets off-label use of FDA-approved drugs, since development of specifically targeted new drugs is prohibitively expensive and time consuming, but many, many drugs already exist and might be effective. While, individually, rare diseases impact few people, cumulatively, many many rare conditions impact large numbers of people, and so applying this collaborative method can be tremendously impactful. 

They are applying the same collaborative method to COVID19 treatment: The Castleman Collaborative is now applying the methodology to COVID19, https://cdcn.org/corona/. Their first step is compiling a database of off-label use of drugs to treat COVID19 symptoms, aptly named CORONA for COvid19 Registry of Off-label & New Agents. Having that database openly available to those around the world who are researching treatments helps prevent duplication, combine efforts in the medical community, and lets researchers and practitioners build on each other’s knowledge, which has always been the promise and practice of science.  

‘Open’ is a critical tool for solving hard, global problems. Open resources (education, data, software) and collaborative processes are unique in their ability to pivot to address new crises and public concerns, because they remove barriers to building on previous work and disseminating knowledge quickly and widely. In the case of the pandemic, this gives open collaboration a fighting chance against the virus, which also spreads widely and builds on its own infectious success. My day job is helping students learn and achieve by building effective products, which also benefits from and is accelerated by open content, open research, and collaborative team processes. My interest in open software started in graduate school and the more I learn, the more I believe in its potential to help the world. In this global health crisis, open solutions are continuing to establish themselves as an integral part of the thriving open software ecosystem that I am proud to be a part of. 

1 From the Castleman Collaborative website, July 6, 2020

b&w drawing of covid19 virus next to black hand

The Two Pandemics

Taking a backseat: My blogging on product management and fair and equitable AI has taken a backseat lately to the historical pandemics sweeping the United States and the world. COVID19 swept through the world, striking down the physically and economically vulnerable, a population that is disproportionately composed of black, indigenous, and people of color. Then, the death of George Floyd at the knee of the police dramatically spotlighted the effects of systematic racism, prompting a resistance to the structures that have long oppressed black Americans and individuals worldwide. 

Lifting up the voices of others: I am not an expert on either pandemic, and I am young enough, white enough, healthy enough, and technical enough not to have suffered from either personally. That lack of expertise and experience has meant that I haven’t wanted to throw in my voice, but at the same time, as the signs at the march on Tuesday here in Houston said, ‘silence = complicity.’  Instead of adding my voice, I’d like to uplift the voices of others who have been fighting for equality long before this worldwide outpouring of attention, and to whom I look for strategies to sustain this movement for justice past its current hot-topic moment into real, lasting change.

How to be an ally: Here is Sojourner’s ‘For our white friends desiring to be allies’: Some of what is in that article: Listen more, talk less. Learn more and read more (with a great reading list) before asking, but then ask. Stop being so surprised by outrageous racism and stop wishful thinking about color blindness. Finally, keep trying, keep showing up.    

Local Houston resources for action and understanding: Rice for Black Lives raised over $90,000 in a single day for four Houston organizations, Black Lives Matter Houston, Texas Organizing Project, Indivisible Houston, and Pure Justice. Dr. Howard Henderson, who directs Texas Southern University’s Center for Justice Research, founded the center specifically to research race, the criminal justice system, and society in one location. He discusses George Floyd, the reaction in the country and Houston, what research says, and what the center is studying now.  

Thinking about sustaining movements: Right now, to create a humane society, there are many things to work on, and so I have been thinking a lot about what is required to ‘win’ and sustain achievements. Two writers that I have been reading and recommend are Jane McAlevey and Erica Chenoweth. Each is writing about what is required to build a movement and achieve change. McAlevey writes about union organizing based on her experience as an organizer and Chenoweth studies the characteristics of successful political movements to replace non-democratic, authoritarian leaders, using data from 1900 to now. Although each is writing about movements that aren’t directly related to the current situation, their analysis provides concrete pathways to effect change.

Jane McAlevey: A Collective Bargain: Unions, Organizing, and the Fight for Democracy  McAlevey talks about how to win change by increasing support and numbers, not just mobilizing the existing base of support, and then building and sustaining the capacity to take action strategically to achieve change. Key aspects of her methods are:

  • Increasing support by identifying organic leaders 
  • Building coalitions by listening (what are the three things YOU would change) 
  • Building participatory organizations
  • Creating hard tests to measure the capacity for action before deploying it. 

With a union, winning the vote to establish the union is just the first step. What comes after is crucial – sustaining the pressure to achieve actual change. Maybe this is what has been missing with political voting. Getting a candidate in is only the first step. Getting the candidate to represent requires continued strategic pressure.

Erica Chenoweth: “Drop Your Weapons – When and Why Civil Resistance Works in Foreign Affairs. This journal requires a subscription, which you can often borrow through your local library. You can also hear her on the Ezra Klein Show podcast. She identifies three aspects always present in successful movements: mass participation, defections from the ranks of the resisted, and flexible tactics (protests, strikes, boycotts, etc.) The global and wide-spread national response to George Floyd’s death (mass participation) have the potential to position this as a strategic moment for real systematic change.

I have committed my time to making knowledge more accessible through Connexions, my Shuttleworth Foundation fellowship, OpenStax where I work now, and through this blog by sharing what I have learned from others, from research, and from experience. I hope by sharing these resources and my personal takeaways from them I can help to support a movement I believe is long overdue.